Thursday, December 24, 2009

Tuesday, December 22, 2009


Burke has made a lot of progress today. He is more calm today than yesterday by far! He was thrashing a ton yesterday but today they said he is acting more like a normal patient would and how they prefer him to act. When he wakes up he is calm and more reasonable than he was yesterday.

Milestones for today are- the LAP line is out with Burke's help! That line is measuring the pressures in his left atrium and is sewn into the skin so it wouldn't get dislodged too easily. Well, Burke decided on his own that it needed to come out this morning. So he just rolled over and undid some of the stitches! I guess it was pretty crazy in here after that. They get worried if that gets pulled out because there could be residual bleeding in his heart if it occurs. They did an ultrasound to make sure there wasn't any damage internally and thankgoodness there wasn't! There was quite a lot of bleeding at the site of the stitches so they had to give him some blood to make sure he had enough from what he lost but then also give him a buffer if it decides to bleed a lot more later. They were planning on taking out that line today anyways, Burke just wanted to get that going!

When they were trying to give him blood they found that most of his IV ports in his hands and feet were ruined in the whole ordeal. As a result they had to pull two maybe three of those out. Burke is a man who knows what he wants. They do have to put another line in for emergency situations which will stay in until we leave, but they will do that tomorrow.

They have also weaned him down on his oxygen flow which I am so glad because he hasn't been able to eat on the high flow cannula. He took his sippy cup just great! Actually he has been asking for a drink since yesterday! So, today he has taken a ton of water. He is still groggy from the drugs but he is doing great now that he can drink again. He fell asleep just a little bit ago so we haven't fed him solids yet but we will later on today. And they don't want to rush into too much food too soon.First time drinking from his favorite sippy since before surgery!

Tyler held Burke today for the first time since surgery. I went to take a nap at the hotel and Ty got to hold Burke and Burke just LOVED it! They fell asleep together and had a two hour long nap together! Total bliss!
Being held for the first time since before surgery!
So, for the really good news... they think he will probably be moved to the floor tomorrow which is one step closer to going home. And one of the doctors said that MAYBE just maybe he would be ready to go home for Christmas!!!!! I don't know if I should even say that so I won't get too disappointed if it doesn't happen, but wouldn't that be amazing if we could get out of the hospital basically a week post-op! They say that he is progressing great and there is not much more they need to do for him in the hospital.

I have been worried about if he will be able to eat enough or gain enough weight to get discharged from the hospital, but they say he doesn't necessarily have to gain weight in the hospital in order to get discharged, he just has to prove that he can stay hydrated. He loves his sippy cup so hopefully he will keep progressing nicely over the next few days and we will be out of here!! YIPPEE!!!

They also took out his feeding tube when they extubated him. I am so glad they took it out for many reasons but the main one is that they can't rely on it and just start feeds through the tube of which I am SO glad!

Like I said early they are weaning his oxygen slowly. They will take him off the oxygen all together tomorrow!! I can't even believe it. I mean that is what this surgery was supposed to do- get him off the oxygen- but I just can hardly comprehend Burke not needing oxygen. I get totally and completely excited and giddy inside to think of the possibilities for this little guy!!

Monday, December 21, 2009


Burke was extubated around noon today! What a wonderful thing! Look at how good he looks! He got pretty agitated afterward for awhile. He is still in between sleep and awake with all the drugs so he doesn't know what he wants nor do we. His voice is still a little horse from being intubated but it should come back soon. He did manage to get out a word which was yes. He answered a question I asked him. He is so sweet. They gave him some meds and he is now sleeping and looks really comfortable. His vitals look great and the pressures in his heart actually came down after the tube came out which all the doctors were a little confused by but can't complain.

There is some bleeding which you can see in the pictures. It is under his dressing on his chest. They took out his chest tube earlier this morning and when they were getting him ready for extubation he got a little agitated and was moving around a bit which caused the bleeding. After a chest x-ray and an ECHO to make sure it wasn't any of the lines that are sewn into his heart for monitoring purposes, they decided it was just from the chest tube. They do not want to sew another stitch to stop the bleeding because they said it would just pool inside so they are just going to watch it and change the dressing as needed. It will stop as they give him some platelets.

They also took out an IV line, his rectal probe in his bum that measured his temperature, and his urinary catheter. Luckily they did that all before they woke him up to extubate him.

That is the update for today so far. They are very pleased with his progress thus far as are we. We are still amazed with all he has been through he is doing great. We just hope and pray that sometime soon we will be able to reason with this little one as he wakes up more.He looks pretty comfy! Don't you think?

Sunday, December 20, 2009

The Exodus

Since I am caught up with Burke's progress in the hospital I thought I would back track a little bit and blog about our trip out to Stanford. Here are the kids with Kyle before we left! Kyle didn't want us to go. And the kids have been missing him while we have been gone. Kyle also went through Emma/Burke/Rachel with drawls.

We thought we would take our time driving and break up our trip a little bit. The first stretch was from home to LA. We stayed with Tyler's nephew and his family for the first night. It was fun for Emma and Burke to get acquainted with Evie their cousin once again. Summer was the last time they saw her. They also loved seeing Chet their new cousin. Both our kids wanted to hold him a lot. They LOVE babies! Here is E with Chet. Thanks Jake and Grace for letting us stay with you guys!!
From LA on we decided to take the 1 up the coast of California all the way to the Bay Area. Tyler wanted the scenic route and it was sooo worth it. It was a little long, but the kids did great and it was so fun!! We stopped many times to get out and check out the coast. We saw some interesting things on our drive. We saw zebra with some cattle. Yep, that is right- Zebras just hanging with the cows! That was right along highway 1 on the land in front of the famous Hearst Castle. We wished we could have driven up to see the castle, but you have to take a tour in order to go and see it. That was an interesting historical site. And they have had some interesting exotic animals brought in to add to the site.
Next we saw these awesome Elephant Seals! Ty got out to see if he could spot any before we got the kids out, and sure enough he spotted this whole beach just full of them. It was awesome. We were only about 8 feet above them. They woke up a few times to look at us and growl at us. The kids thought they were neat. Taking this route was great for our little family. We have never really been on a real family vacation-outside of Utah or Idaho where we could just relax and take our time and enjoy the sites. It was WONDERFUL and I smiled a lot during our drive up the 1.
We stopped just out of San Luis Obispo at this great beach. We got the kids out and they loved it. Burke was more interested in the waves and the beach than Emma. She stayed far away from the water- I guess she is still traumatized from the last time (her first time) we went to the beach after Disney Land. I kind of forced her in the water so we could wash all the sand off. Let's just say she HATED it. She was basically screaming bloody murder. Poor girl.
We got Burke these cool shades for him before our trip because he is always telling me the sun is in his eyes back home. It gets pretty bright there for sure. He wore his shades quite a bit on the trip- he loves them. He used to wear Emma's- that was a funny site. E checkin out the ocean with her wild post-two-french-braids- look! Classic.
Tyler has really gotten interested in Photoshop lately. Since he has had plenty of extra time because Burke's surgery was pushed back a week, last week, he decided to play around with a few pictures he took of the ocean. He thinks it is a little too photoshopped but I think they look awesome! He has a creative mind and is very detail oriented so photoshop is a good fit for him. He can photoshop all day some days. Nice work babe! Part of the 1 is very curvy and the road is right on the cliffs and the drop is about 500ft down to the ocean. Not so much fun. Right at the begining of this curvy part both kids fell asleep and were out for a good 2 1/2 hours! It was so great. Tyler and I were able to have a normal adult conversation!

Well, we ended our trip in Palo Alto two days before surgery. He had pre-op testing the day before the surgery was supposed to happen. That day mom and dad came and got Emma and took her up to their house. She was so excited to spend the week with Grandma and Grandpa! Then that night we picked up Jan, Tyler's mom up at the airport. She came to be with us for surgery and the few days post-op. We picked her up and headed to San Fransisco Warf for dinner. It was a great night and we were so excited for surgery the next day, or so we thought it would happen the next day. Burke's face in this picture is awesome. He was in a funny mood that night.

Changing the dressing

Last night was the first time the nurses were to change the surgical dressing after surgery. If you click to enlarge the picture you will really be able to see up close the stitches holding his chest together. This surgery was different from the past in that they used stitches on the outside of his chest instead of internal stitches. These ones will have to be taken out- not fun. They also used glue to hold the top part of his chest together near his neck. It is like super glue! But overall his chest looks awesome! Burke your bone is fixed!! Before surgery we kept on telling Burke that Dr. Hanley was going to fix his heart and also his bone. I guess we told him enough times because he started telling other people that he was going to have his bone fixed, and "my heart". I love this little guy!
This picture below is just to inform everyone that we are still alive. Thank you Jan for all your love and support and for coming out for the surgery. It was great and we really appreciate it! Overall today has been okay. Burke has been waking up out of sedation quite often throughout the day and when he does he gets pretty upset. Finally, by the evening time they realized that he was probably not going to wake up any happier and that tomorrow they will extubate him in an effort to keep him a little more happier laying in bed. I have a very strong feeling that they are right!! He tries to protest everything that is going on by shaking his head and kicking his legs and feet even when his eyes are shut and totally drugged up!

So, tomorrow is the BIG day!! The doctors say he is doing great and he is looking good. We know that once that tube gets out, he will be on the fast track to getting outta here! We will post tomorrow once the tube comes out. We mostly can't wait because then he will be awake a lot more!

Saturday, December 19, 2009


Well, Burke's ECHO turned out great! They checked the function of his heart and all the chambers and everything looks and sounds great. They don't see anything wrong and will just watch the numbers on the monitor and try and keep him good and comfortable throughout the coming days and nights. We are so relieved that nothing was wrong with the function of his heart. All is well!!

Post Op

Yesterday was pretty uneventful which we are learning after going through 3 previous open heart surgeries, uneventful is the way to go. They took off the paralytic drug yesterday around noon. They thought it would wear off about an hour after that, but he didn't end up moving until late afternoon. They were not worried about him not moving for so long, it just will postpone his extubation. They thought that maybe he could be extubated late today, but he is fluid positive and they want him to have less fluid in his body before they take the breathing tube out.

He had a good night last night and this morning has been going well too. We are learning that post op recovery time is a balancing act! They change and tweek his meds frequently to keep him happy and calm. They might order an ECHO later on today because his pressures in his Left atrium sometimes creep up. They were planning on doing an ECHO tomorrow before they extubate him, but they just might order it sooner to make sure all is well in his heart. But overall his vitals are reading very well and heart and lung function are doing great. His lungs are starting to experience some fluid movement but that is expected because he is moving around more. It is good to get everything moving and working in there and as the days pass by he will eventually pee off the fluid out of his lungs.

He has opened his eyes a few times today, but he has seemed pretty agitated so we try and calm him quickly because he still has the breathing tube in and they don't want him to pull it out or to damage his throat by moving too much. So, needless to say they keep him pretty sedated. Tomorrow they will get him to wake up more and hopefully by late tomorrow they will get that breathing tube out and Burke will be a lot more comfortable with that out of his throat.

We haven't taken many pictures just because he is still in the same bed, nearly the same position and hasn't changed much since he came out of the OR. But, here are a few of what he is going through. These were taken Thursday right after they got him into the CVICU (Cardiovascular Intensive Care Unit) just after surgery.

This time around he has been way less puffy and swollen. They say altitude plays a big factor in that and also the expertise of this surgeon. We are amazed still with all Dr. Hanley has done for Burke. He only has one chest tube this time around instead of three- also due to the altitude.

Well, as I am at his bedside writing this, the doctor just came by to tell me they are going to order an ECHO to check out his heart. I don't think this is anything to be alarmed by but we will just have to see. I better go now.

Thursday, December 17, 2009

A Success!

The surgery was a success! Dr. Hanley fixed Burke's heart! I can't believe I am actually writing that!! Burke's heart is now a normal working heart! They fixed everything that needed to be fixed and all went well! They expect his oxygen levels to be normal. They expect him to run and play like a normal child, no more huffing and puffing. They expect him to not need another surgery for 5-10 years!! Yeah, you read that right! Years, not months! I just thank our gracious Lord above for overseeing this surgery for I know He was there helping. We are just speechless. Totally speechless.

We will be able to see him in about 30 min. He will be intubated for few days but recovery could be quick and they don't anticipate anything going wrong. Now that doesn't mean nothing will go wrong, but just that it shouldn't. We are just grateful for this full repair surgery. It has been a long road coming. We are eternally grateful for this incredible blessing from Heavenly Father.

Surgery Has Begun

Well, we just met with Dr. Hanley. He is now back in the OR ready to open Burke up. Burke is all prepped and ready to go. The surgery can take anywhere from 6 to 8 hours. Primary's gave up hourly updates, but this hospital doesn't do that. We should hear though in about 2 hours or so if they will be able to close the hole in his heart or not. They will send word out to us when the surgeon knows what he will do. He sounded confident in closing the hole, but this morning he wanted to make sure we knew that there is still a chance that they won't be able to close the hole. We are hopeful, very hopeful.

This time taking him back into the OR was hard because we know what he was going to be up against these next few weeks. I just want him to be comforted through this time and I know Heavenly Father will do that. They gave him some medicine to make him good and happy. He was pretty giggley before I put him on the crib they took him back on. We will try to keep everyone updated. I forgot my phone so call Tyler's if you need. Thank you for all your love support and prayers during this time, they really help.

Here he is as they are taking him back to the OR. He looks good and relaxed! We love you buddy!

Sunday, December 13, 2009


Well, as some of you know, Burke's heart surgery was postponed on Thursday. We were all set and ready to go, I mean we were checked in pre-op testing done and in the waiting room and everything. We were just waiting for the surgeon to finish his case before Burke's and into the surgery waiting room walks the surgeon. We were so stoked. We thought he was coming in to talk and meet us before surgery. Here the moment we have been waiting for for so long was finally here, or so we though. The first words out of his mouth were, " so, we have some bad news". I just about died. Our hearts sank. He told us there was another case that needed emergency surgery right then and that they would have to postpone surgery until next week. They wouldn't have any bed spaces for a few days for after surgery so they can't do surgery until Thursday of this week! 

Our hearts go out to the family who has the teenage boy who was in heart failure to the point where he needed emergency surgery. We can't help but not be too disappointed because it was exactly a year ago when Burke and I were on a plane being flown down to Primary's for emergency surgery where Burke bumped someone else who was on the schedule. In a very small way we are returning the favor. Our hearts go out to that family.

So, our plans have changed yet again! We are now staying at my parents house where I grew up until surgery. We have been praying like crazy that Burke won't get sick this week and that his bone growth won't get infected! We are doing good so far. So we are just hanging out and enjoying some time with Grandma and Grandpa Bates before surgery. We will keep posting updates when we can. Thank you for all your prayers and thoughts during this time and sorry to keep you on your toes for those who have been waiting for an update.  Thursday is THE day!!! We can hardly wait!!!!!

Sunday, November 22, 2009

Ode to Mr. Blanket

The other day Burke hurt himself some how and sweet Emma came right over gave him his blanket and sat down right next to him. She put her arm around him and starting quietly giving him words of comfort. I love when she is like this. It melts my heart. This is one way Burke receives comfort.

Another way Burke is comforted is by his blanket. This blanket deserves a post in and of its self. So...
... here is our ODE to MR. BLANKET: This blanket was made by most of Burke's girl cousins on Tyler's side of the family and by Grandma Johnson. The story behind the blanket goes as such. So, last July of 2008 Burke was scheduled for a heart catheter and possible surgery. We really thought that by that time his arteries had grown enough to warrant a surgery which would be the full repair. And if the arteries hadn't grown there would be some sort of surgery to help the arteries to grow more. So, the Johnson family all got together for a Fireside to start off the annual Johnson Reunion. Each year the fireside is different and sometimes has a theme to go along with it. This year Grandpa chose miracles in general but with his testing coming up he thought that we could think about the miracles associated with Burke. The meeting was wonderful. It was spiritual and to look back on that meeting we have come a long ways not only with regards to Burke's heart growth, but with my spiritual growth. I am grateful for that time where I can look back on that meeting and know that I have a loving family who has been a part of Burke's many many miracles and who supports and comforts us through this time.

So, after the meeting Grandma J and all the nieces gathered around little Burke to give him something. I had no idea what they were up to. This is when they presented Burke's Lion heart blanket to him. It had a Lion's head on it out of the shape of a heart with the mane being the thumb prints of all the aunts, uncles and cousins. In the corner it says, "Thumb body Loves Burke." The ears are made from cuffs of an old shirt because Grandma knew that when Burke was a baby during the winter time when he was wearing long sleeved shirts a lot. He used to suck on his two middle fingers on his right hand and pull down his cuff into the palm of is hand an suck on it as well. When the weather started getting warmer and I would put short sleeved shirts on him he no longer had a cuff to suck on. He would actually try pulling down his short sleeved shirt to suck on it but he could never figure out why it wouldn't come down like his long sleeved shirts would.

So, because this Lion blanket was a very warm one it wasn't until the fall time that he developed a strong connection to it. I started giving it to him at night time and he instantly was drawn to the "taggies" as we now call them on the lions head. Those cuffs from the shirt that were the lion's ears were the taggies that Burke holds and smells and finds comfort from.

We continued to go to the doctors monthly for tests and it was at those times at the hospital that the blanket became a must have item. It soothed him. It comforted him. That blanket has been everywhere. It has been everywhere at Primary Children's- in the Cath. Lab, in the PICU, in the x-ray, in MRI, and even in the OR. Blanket has been there for Burke when he wakes up from all of his testing and procedures. Blanket has been my right hand man because I haven't always been able to comfort him. Some kids just want their blanket. And that is Burke. And you know what- I LOVE it!

Blanket is there for Burke everyday and has helped him and me. Burke is continually getting more and more tired. Some days are better than others but for the most part he is gradually getting worse. He gets tired out super easily. He is still on his feeding tube and after feeds he gets tired because his heart is having to work harder to deal with the food that was artificially put there. Especially after feeds Mr. Blanket is there to help me help Burke to realize that he needs to take a break or he will throw up.

I tell Burke he needs to take it easy or he will throw up-all the time. I just have to get him to understand his limits because sometimes he just pushes past his limits resulting in throw up all over him and me, an not only that, he usually coughs and gags for a good while after that and his sats go way low because of it. Not so good for the heart you know? Anyways, today I was playing puzzles and blocks with him- some quiet toys- so he wouldn't exert too much energy because he had just had a feed. I told him, "Burkie, you need to settle down bud", and he replied back to me saying, "because I will throw up...and cough....and gag?" No joke. That is what he said to me. He is actually remembering to settle down. I just looked at him amazed, and said " yes, you will throw up". I love this kid. I can even tell him to go get blanket so he can hold the taggie while he sucks on his fingers. He did while we were playing today. He will lay down on blanket and now, he will even talk to his blanket. NO JOKE! He talks to it, gives it drinks if he thinks it is thirsty! I LOVE IT!! This kid is amazing and so smart, and kind, and funny and creative. I am amazed daily with what this little kid does or comes up with. He has a great teacher/ example to follow being that of his big sis who is creative also.

Anyways, there you have it- on record now- The Story of Mr. Blanket. Did I mention he has multiple names; Mr. Blanket is probably to top name, Blanket, blankie, blank, bankie (which is what I used to call my baby blanket that I was OBSESSED with), and there are probably more but that is all I can come up with right now.

So, I want to shout out and give a HUGE THANK YOU to all his little nieces who sat down with Grandma and brainstormed ideas of what blanket to come up with. Each of them gave their input and each of them helped hand stitch the blanket. I want to say to all of you- that this is THE BEST blanket in the WORLD! You guys will never know how much this little "comfort" has really done to help comfort our little guy with everything he has to go through.

One very smart nurse at Primary's labeled the blanket with medical tape so as to not loose it. It reads: "I BELONG TO MR. BURKE." I love it. I kept it on and hope it keep it on for a good long time. It is starting to come off with how often I have to wash it.

Here are just some of the MANY MANY pictures we have of Burke with Blanket.
This picture is funny for many reasons, but I have to mention that Burke's obsession with sucking his fingers and smelling his taggies has rubbed off on Kyle. Yep, I think Kyle sees that B is so obsessed with it and he thinks he should do it too. So, yep Liz, you are welcome! Good luck with that one. (Actually, I am really sorry- you know that.)
Thank You MR. BLANKET!!! We, nor Burke, could do it without you!

Sunday, November 15, 2009

Full Repair Surgery: December 10, 2009!

Well, it's about time I update and document Burke's life and experience with Congenital Heart Disease (CHD). I haven't been as consistent about documenting Burke's life. To be honest, sometimes the task seems daunting. Yet, some days I feel like I just NEED to do it. So, here I am, I am just DOING it!

I am going to type something that we as a family have waiting Burke's whole life for.


There- I said it. I just can't fathom it all the way yet. Though in one sense I can. Because I know what he can be. I know that IF they can successfully fix his heart so that it will be beating inside of him pretty much like a normal heart, than I know what this child is capable of. He is capable of running and playing and jumping and riding his bike just like any other 2 1/2 year old little boy. I know what he is capable of because he is a fighter and strong. And I am so grateful for this boy. I am so beyond grateful for him in my life. I just CANNOT even wait for December 10th. I cannot even wait. The wait is what will just test be beyond anything. Though I know I can do it, I just don't want to, you know what I mean? My little guy can get his heart fixed finally. His pulmonary arteries are big enough to enable him to get his full repair of his heart- so let's do this- NOW!!! That is what I want to scream and pledge to all the doctors!! But, still I have to wait. It is good for me to learn patience and endurance and I know that deep down inside. But deep down inside me is also a conflicting force. Impatience, anxiety and fear. I am impatient because I want my little guy to have this surgery because he can get off his oxygen. He can get off his feeding tube. He can eventually get off his meds. He can be free. And I will be freed from tubes and cords also. I am impatient and anxious and fearful because I don't want Burke to get sick between now and December 10, because that means that he won't get that full repair surgery on Dec. 10. He and I and our little family will have to wait until he recovers which could be a month. I am nervous that he will get sick. There I have typed what I feel anxious about. I have prayed and keep praying everyday (and will continue to pray- probably everyday- until Dec. 10 that he will not get sick. I want that more than more than anything right now in my life. I want him to be healthy and strong and ready for a new life with a fixed heart.

Burke has had all his past 3 open heart surgeries and other testing and procedures up at Primary Children's Med. Center. But they don't feel comfortable doing his full repair surgery without a Senior Surgeon on their staff. You see a terrible horrible awful thing happened almost a year ago now. Dr. John Hawkins- senior and cheif Cardiothoracic surgeon at PCMC was diagnosed with stage 3 Pancreatic Cancer. Last January or February of 2009 they gave him 3 months to live. Everyone who knew him or worked with him or had him work of them were devastated. I still can't believe it. He has helped and fixed so many kids hearts. He has helped on Burke's heart. He has been in on every surgery that Burke has had up until now. We have a special place in our heart for him and are grateful to have known him. He is actually still alive and is doing better than anyone has expected.

So, since he retired that surgeons at PCMC did not feel comfortable performing such a difficult surgery with out the experience of a more senior surgeon. We had to start checking out other places for a different surgeon. We knew that we wanted to go anywhere even if it meant us taking Burke all the way to the other side of the country if he were to get the BEST care possible. We didn't just want to settle for anywhere know how difficult this surgery could be. Primary's started sending Burke's medical information to Texas Children's Hospital and to Lucile Packard Children's Hospital at Stanford University. These two hospitals are up near the top in Cardiothoracic Surgery. We debated the two since we live in between the two places.

My decision was made when I was researching the different surgeons from these two named hospitals. I came to Dr. Hanley from Lucile Packard and I was overcome with emotion and couldn't contain myself. I cannot still to this day put into words what I felt, but I know the feeling I felt and I will never deny that. I still feel it now when I look at the hospital's website and see his picture. I knew that he was going to be the one to do Burke's full repair surgery. This was about 2 or three months ago. So, though I knew that I felt that we should go to this surgeon, we still had to get him to accept Burke's case. Dr. Hanley is a world renown surgeon. He is amazing and was a mentor and teacher to our surgeon Dr. Kouretas from Primary Childrens. That was also a deciding factor in going to with Dr. Hanley-because he had ties with Dr. Kouretas. It also helps that my parents still live where I grew up in Northern California so they can be of help and there for support during his surgery.

Burke had another Heart Catheter awhile back here at Phoenix Children's hospital and all looked promising in his heart to keep going forward with getting him to his full repair. We sent his test results of the Cath. to Dr. Hanley and about two or three weeks later we heard from our Cardiologist- Dr. Graziano- of the good news. Dr. Hanley accepted Burke as a patient! We could not believe it! What we had hoped and prayed for for so long had come to pass.

There have been so many miracles that Heavenly Father has graciously blessed us with. Though I know we don't deserve it most of the time, I know Burke deserves it for he is perfect. And I know Heavenly Father is watching over and protecting him. I know that He watches over us and is mindful of me and my little family. We have really been through it over the past two plus years. We have had the highest of the highs and been through the lowest of the lows. And I know Heavenly Father has watched over us every step of the way. There are days where I think that it can't get any worse. Let's be honest, everyone has those days and you know what I will be the first to tell you that I have had plenty of those down days. And sometimes it even gets worse than those worse days. But you know what, there are better days. And then there are great amazing and perfect days where I just want to sing on top of a mountain just like Maria from Sound of Music.

I think what helps me to have better days than worse days is to be faithful. Now this hasn't come easily for me. I have a hard time doing the small and simple things that are- over time the biggest and best thing for our spiritual grow. They are necessary. They are vital. They are the Sunday-school-lesson-answers that we- I tend to overlook their importance. Pray. Read your Scriptures. Be faithful. Be obedient. I have become complacent in the area of ready scriptures and being obedient. Because through obedience comes faithfulness. And with our faith we can move mountains. With our faithfulness we can be born of God. With our faithfulness we can heal hearts. With our faithfulness we can believe and know that Burke's heart can be fixed, healed and become whole. This thought more than anything yet in my life makes me want to be strictly obedient. And at this moment I know exactly why Heavenly Father has us go through the experiences and challenges we go through. For our spiritual growth. To draw closer to Him. To repent of how we are naturally and to change actually change to become more like Him.

Now, I say these things like I have done a great job every singe day through this trial I am going through- no. I have not, quite the opposite actually. It's been rough. But I know that Heavenly Father has blessed me with quite a tender mercy just recently. When we finally had a date for Burke's surgery was the tender mercy from the Lord. He showed His grace and mercy towards me that day because He knew that I needed to see the light at the end of the tunnel. Knowing that Burke will have his full repair gives me so much hope. It makes we weep at night knowing that there is a possibility that Burke can become normal. It is making me emotional right now. When the end is in sight there is hope. When it is within reach there is the hope I need to get through these trying times. Heavenly Father is helping me through this trail because He is trying to teach me that I need Him. I have learned that. I know that for a fact now. I have always believed that, but after you go through something that tries you beyond what you think you can handle, you know that we NEED HIM. I NEED HIM. And I will always need Him. For He is our Maker and loves us so much that He will show us He is here for us when we are ready to NEED HIM.

I can't put into words how grateful we are for Dr. Hanley for accepting Burke as a patient. I can't put into words how excited I am for Dec. 10th. We had a phone conversation on November 12 with Dr. Hanley. He exceeded our expectations ten fold. He was confident in fixing Burke's heart. He gave us hope and reassurance. He told us that though this surgery might be Burke's most complex surgery, his recovery might be the quickest because his heart will be fixed. We could only be in the hospital for 10 days up to 2 weeks! I just can't put my mind around it yet! We are just beyond excited and anxious and SOOO READY for it to be December 10th I can't even stand it.

We will keep you updated about how Burke is doing. I want to document how he has been lately for my records and for his. But, until then, we wanted to share the most amazing news about Burke's upcoming surgery! Have I mentioned it will be on DECEMBER 10th!!!! Oh, I did, didn't I?

Sunday, November 1, 2009

Halloween 2009

Eat your heart out! Liz with Redbucket Photography took the kids out last week for a fun filled photo shoot for Halloween!! Can you say Adorable!! I think they turned out perfect. Emma was a ham for some of them and I love it- she actually is starting to pose for pictures. Emma is wearing Liz's ballet costume of minnie mouse from when she was little. So stinking cute- thanks Liz for letting her wear it!

And here's the poser Burke. I just LOVE this one! He did this all by himself. He was in a weird mood that day, and we didn't get a ton of him smiling perfect, but we got some cute shots.

This one Burke is listening to his heart. PRICELESS! He loves stethoscopes.

Here's the best group shot. Pretty dang cute it you ask me.

On saturday it was ASU's homecoming and they had a big Halloween school parade and so we brought the kids to enjoy the day. It was a pretty day and we had fun starting off the Halloween festivities early in the day. Emma was mad though that we didn't fill up her bag. I kept having to remind her that tonight we would trick or treat and get a TON of candy. This fun balloon making clown made Emma Minni Mouse ears. It was her first time ever making minni mouse ears, I think it turned out cute! We lost her ears to her costume during the week so before we went trick or treating I made her some new ones. I felt so proud of myself. I made part of my child's halloween costume. I totally felt like a real mom. Because isn't that what a real mom does, she makes halloween costumes, or make alterations on the costumes. She is wearing her homemade ears here! Love it! Emma was adorable. I kept on saying that all night long as she was running up to each lit up house. They both got a ton of candy.
This is us while we were trick or treating. It was so fun, the kids were having a ball! I even dressed up. I usually hate figuring out a costume, but it was easy this year because I had everything for a cowboy. I think this might be my staple costume from now on- sweet!!

Liz and I made them each trick o treating bags to carry. Burke's has a Red Cross symbol with Dr. Burke Johnson, MD on it. Emma's has a big E for the obvious, and Kyle's has Micky Mouse ears on it with his name on it to match his name on his hat. I have done quite a few sewing projects since being down here in AZ because I have access to Liz's sewing machine from my mom. So, this was one of the many projects I have done and I think these bags turned out great!

Alright, Already!

Alright, brace yourselves. This is probably my all time favorite picture of the Burke! PRICELESS!
This kid was SO proud of his tower!! I love it. He is adorable and he has come alive lately. There is no doubt this kid is 2 years old. He is getting more and more strong willed, but go figure he is related to Emma-Queen Strong Willed herself!
The Queen!I had to get an everyday "here's what we do during the day picture". The kids eating lunch like usual, which they do everyday. There you go. MOVIE Night!! We watched Marley and ME!! It was so cute and funny and still to this day three weeks later- the kids are still asking to watch Marley. They loved it. (My feet look huge sticking out of Burke's blanket, I look huge in that picture- awkward!)I gave Kyle a hair cut the other day. He sat so still for about a half hour. I couldn't believe it, my kids never do that. Okay, I can believe it, because my kids are SO much different than Kyle, he is SO mellow!I just loved this cute picture of Kyle. He is adorable. Can't figure out what E is doing though.
And no, that is NOT a pregnancy test- it is a thermometer. Serious. The kids are obsessed with taking their temperature, and now a days Emma likes to pose in pictures with anything that is cheesie- like a random thermometer!! I just thought it was actually a good picture of us.

Ryan and Liz were given this awesome scooter! When Ryan fixed it he took the kids around the block on it- it was awesome!! It goes like .5 m.p.h. It was great fun!
The pregnant woman (aka Liz) even got on for a ride!! That scooter was awesome.

This is a classic position for the kids during any given day-- starring straight into the tube! Thank you Rachel from "Baby Signing Time" you are our favorite babysitter!